“Nothing About Us Without Us”

(Ask US what we want!)

I heard this chant during my city’s Disability Pride Parade and it has been a mantra that has resonated in my ears.  How often do we involve those we influence in life-changing decisions?  I think about this often in the context of my current work.  In fact, I see that this tends to happen quite frequently when the stakeholders are what we would typically associate with disenfranchised groups.

In my current work, I see that the initiative that was put forth by parents in the district was completely diluted and its urgency was minimized by high ranking members of the department that was entrusted with carrying it out.  Likewise, I see that many decisions are made for families, children, adults with disabilities that do not involve those who would be most acutely affected by it.  This has been proven to me, time and time again, by people in decision-making positions, and by special needs families.

What can we do to change this?  This is a huge proposition, no doubt.  However, I always believe that there is strength in numbers.  For starters, it would be a great idea to get involved, participate.  It is easier said than done, I know, especially when many of us hold more than one job to make ends meet.  Find any way to participate possible:  Twitter, email, evening meetings, or any type of social media group that would help you gain perspective.  Second, you can organize, and by this, I mean get together, and reach out to those who need to hear you.  Finally, in the way that it is possible, go out and vote.  Choose candidates that are more likely to hear your concerns.  Remember that your local candidates are the ones who are most likely to influence your local decisions.  Don’t be afraid to ask.

Keep in mind that change takes time, but also remember that we must continue to be heard if we want the powers-that-be to understand how important it is for us to be included in decisions that will ultimately be life-changing for us.  Participation, to the best of our ability, is key.

If you need guidance navigating the turbulent waters of participation, drop me a note.

More to come on this subject.  Stay tuned!

Ask Me First!

Parental Rights Violations

Three years ago, when I joined the Enrollment Division at a local education department in a major metropolitan area in the Northeastern United States, I did it partly motivated by the fact that as a relatively high ranking administrator, I would get to make decisions that would influence the lives of students and parents.  I was particularly interested in improving the lives of students with disabilities and their families.  I wanted to influence the decision-making process so that it would be a fair system, equitable, and barrier-removing for all families.

Little did I know that no matter how hard I tried to remove barriers to access, the “system” would see me and my efforts as nothing more than another obstacle.  For starters, in is well known and well documented that our system has been plagued by laws and policies that have historically favored those on top.  For example, in our city, there is a policy that has been in practice in the past few years.  The policy is aptly named “the reform” and even though it claims to uphold the values of inclusion as its advocates claim that “all students must be served in the same schools as their general education peers,” it truly and many times, violates the principle of the Free and Appropriate Public Education for students with disabilities.

In the past few years I have realized that this policy mostly benefits upper-middle class, white students, as they are typically the ones who favored from this loophole between what Federal Law (IDEA) provides as a right to students with disability, and a policy enacted by a local education department.  The local policy seeks to enforce flexible programming for students that were determined to be best serviced in a particular program, typically a self-contained, small, and structured class for students with special needs.  Flexible programming allows schools to place students in large classes, as long as they work to try to meet the minimal requirements on the IEP.  Psychologists working under these conditions, have been advised to recommend programs that would not require schools to service student in small programs for the entire school day, therefore providing the necessary loophole to make flexible programming possible.

In my view, this is a clear violation of parental rights and student’s right to a Free Appropriate Public Education in the Least Restrictive Environment, a set of rules set forth as provisions to one of the most important educational laws of this land.  Here is the caveat to this loophole:  The typical upper-middle class, well-to-do person, is able to consult a lawyer, sue the local education department for inability to provide services under the provisions of IDEA, and get paid thousands of dollars in taxpayer money to send their child to a private school.  As a matter of fact, in my career as an education administrator, this has been the scenario in almost the entirety of cases that crossed my desk.  The typical student whose parents work multiple jobs to make ends meet, and barely have time to sit at the dinner table and help their child with homework will struggle with whatever decisions schools make for them.  Their children will struggle too.

If you feel that your child has been left behind by a system that does not support him/her, and your family, please drop me a note.  I’m here to help.

More to come on this story…  Stay tuned!

We are all Special in our own way! We are not all the same!

Parental Rights: Obtaining Information from your School System

One of the most serious topics that I often have to deal with is dissemination of information on parental rights.  School systems tend to stay mum when it comes to providing accurate, easy to follow, and up-to-date information on how to follow proper procedures when a parent feels that the rights of his/her child have been violated.  I have often encountered those professionals who are simply afraid to mention next steps in regards to disagreement on children’s IEPs (Individualized Educational Plan), will not answer questions about the filing of impartial hearings, fail to point to guidelines and procedures, or simply withhold information that could be useful to a parent in making an informed decision.

Our world has changed for the better in many aspects, but professionals within school systems are still afraid that they could be penalized for expanding parent’s choices since those choices can come at an additional cost to the system.  For example, if your child has an IEP (Individualized Educational Plan) that recommends that for the majority of the school day, he/she is to receive instruction in a 12.1.1 setting (12 students/1 teacher/1 assistant), and your child has not been receiving this type of instruction, then you can request mediation or an impartial hearing to resolve the issue.  Sometimes the issue can be resolved at the school level, sometimes a transfer is necessary, and some other times even a private school may be needed.  In the latter case, the school system is liable to reimburse the parent for school tuition, since federal law clearly states that this is an educational right (Free Appropriate Public Education).

I was involved in a difficult situation just a few days ago.  One of my co-workers, under my guidance, informed a mother that in order to better serve the needs of her child (who needed a great degree of educational supports), she had the option of having him attend a particular school who could supply him with a much more specialized and tailored program.  Of course, if she desired, she could also send both her children, the child who needs a special program and his brother in general education, to the closest school.  They would both be together at this location, and the school would have to figure out a way to service the child with special needs as they do not have a ready-made setting, but the option was also available.  The parent chose to have the siblings in separate schools but felt that this was the best setting for each child, therefore tailoring her children’s education to their needs, rather than using a cookie-cutter formula.

When the above situation was revealed to one of the administrators in the division that manages student enrollment for this school system, I was asked to not have these conversations with parents again, as the choice should have never been on the parent.  The administrator referenced the system’s new guidelines and explained how students’ disability status could not be taken into consideration.  This is a great misunderstanding, as the point of the new guidelines is to expand parental choice, so as to not confine the parent to only one choice, a choice that would only be based on the child’s disability.  However, it is perfectly all right, actually desirable, for a parent to have this information and made the choice based on the information that she has been provided.  This is the student’s right to a Free Appropriate Public Education in his or her Least Restrictive Environment (more on this to come).

When it comes to dealing with school systems, your best option is to ASK, ASK, and ASK.  Don’t forget to drop me a line if you would like to get in touch with me!

Only by asking you will know!

Integration vs. Inclusion

I was recently talking to a group of people from work, a group of counselors and former educators, about the Department of Education’s policy* and efforts on integration and policy change based on this premise.  The integration that the department is targeting relates to efforts in ensuring that students from all socioeconomic backgrounds, housing status, and disability status are represented in all schools, and districts without zoning rules are encouraged and programmed to participate in these efforts more fully, as they are not bound by address rules (zoning implies that a family’s address determines where the child/children go to school).

My contention with the term “integration” stems from my perception on what the term means.  I’m a much bigger proponent of the term “inclusion” as “integration,” in my view, implies that a group of people (namely students of color, students of low socioeconomic status, students in shelters or students with disabilities) have a lesser standing in society and need to be brought into the mainstream, need to be assimilated by the mainstream, and need to be educated so that they are up to par, hence, they need to be “integrated.”  The term “inclusion” on the other hand, implies, in my view, that regardless of the student’s status, the mainstream needs to make the effort to accept and incorporate those students in all areas of life.  Inclusion implies a general character and pertains to an effort from all involved.

Of course, I have colleagues that work in this arena as well, who prefer other terminology.  Even the term “inclusion,” for some of them, is not enough to capture the spirit behind what we are trying to accomplish.  Inclusion, they contend, implies that there is a group of people (people in temporary housing, people with disabilities, you name it), who have a lower standing and therefore need to be included.  They prefer terms such as “coexisting” because terms like do not presuppose any particular standing (higher or lower) within society.  I can clearly see why they take this approach and why they practice using this terminology. 

Do you have any thoughts about these terms?  What do they mean to you?  What kinds of feelings do they provoke? 

Share your thoughts below!

Love & Hugs,

Dr. Klimek

*location to be disclosed at a future date

Coexisting together as an inclusive family!

Taking Responsibility for Our Village

As parents, we may be faced with difficult choices, difficult decisions, and sometimes we get a little sidetracked and lose sight of who we are. Families, and parents in particular, can become really pivotal figures in the development of their children. This is not to say that as parents we shouldn’t depend on a village to raise our children. Much to the contrary, we should keep the village in mind, but we also need to understand that each person within the village has a role that he or she must be responsible for.
It may be tempting to rely solely and exclusively on the knowledge and experience of another person, but the truth is that there is no replacement for the knowledge that we as parents, or as family members, can provide. Therefore, pointing fingers is not useful. Providing support is. Support comes in many different forms and in different directions. We are accustomed to talking about “support” as in coming from the professional to the family, but the family can also provide support to the professional.
In an ideal situation, collaboration is mutual, the village grows, and the knowledge is shared. For example, when a child is having a difficult time focusing on a particular toy, it is important to ask the parent if there was anything happening during the week that may have determined the behavior. The parent may provide information that will save time and frustration to the child, and the teacher may be able to introduce a novel toy so that the child can learn a new task. Support can be something that seems very simple but can have powerful consequences. Knowing that the child had a negative experience with the toy prevents frustration and promotes a positive learning environment.
Our village is richer, when we all collaborate. The questions still remains, what do we do in the face of frustrations? We look inside. There is a way to move forward. There is someone to reach out to. There is a helping hand.

If you are experiencing frustration, have questions, or just want connect, please leave me at the contact form below.

Judgement & Isolation

All parents feel like they are being judged by friends, family, and sometimes even strangers. In the age of social media, everyone has an opinion about almost everything, and everyone has an opinion on how you should raise your child. It seems that everywhere you look, other parents are perfect while you are not. This leads to feelings of isolation. Typically, parent will continually turn inward when they need to reach out and seek help. Parenting is a community endeavor, but for many parents this can be a very lonely experience.
For special families, the feelings of isolation, of being constantly judged, can be even more pronounced. I have experienced it myself as a parent, as a sibling of a child with disabilities, and I have heard different people, relatives and strangers alike, talk about how flawed my parents were in raising my brother. In their view, they could have done it better.
Truth is, being a parent is a very difficult job. Being a parent is a job that should be accomplished not by parents alone, but by parents supported by their communities. Humans are social animals, and as such, we need to be in contact with one another. Being judged leads to parents behaving in just the opposite way, and it is not conducive to growth, both parental and children’s growth alike.
What should we do when we feel that we are being judged? Should we retreat to ourselves? No matter how strong the urge to retreat may be, we need to remind ourselves that this is not the answer. Reaching out to others, using every “judgment” as a teaching moment, as an opportunity to tell others how it feels, is what we need to figure out. There is an opportunity to teach the world how we want to be seen, not how we want to be judged. There is an opportunity to teach others how to become more inclusive without any need for us to be reclusive.
If you have been isolated for some time, reach out to a friend or a professional. Reach out to an understanding relative. Remember the strength that comes from within you, the love for your child, and the support that can come from a community of people that care.
Please reach out to me if you are in need of guidance!

Love,
Dr. Klimek